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I've been diagnosed with trigeminal neuralgia 6 months ago. My pain is continuous.

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julie6606
julie6606

I have been fighting trigeminal neuralgia for 6 months now. It's affecting all parts of my daily living. I've had to either miss work or cry in pain while I'm there. I'm a pharmacy tech and have to deal w customers so this doesn't work for me. I'm taking ( daily) 600 mg tegretol, 20 mg nortriptyline, 1200mg gabapentin, 6 mg tizanadine, and 2 mg clonazepam. I got a trial of lyrica 50mg three times a day but it knocks me out so I don't use it. I have 3 children ( 13, 7, 1 in age and I cannot keep up. Takes me laying around all day just to have the energy to work. ( I work second shift). What do I do? I'm severely depressed as its affecting our income both for loss of work time and cost of medications. HELP!! My fiancée is scared for me to have surgery.

1 like, 7 replies

7 Replies

  • vicky59618
    vicky59618 julie6606

    Posted

    Hi I have atypical trigeminal neuralgia mine started 6 yrs ago as type 1 with long periods of remission then turned to type 2 always left sided episodes used to last 3 days had a wisdom tooth removed 2yrs ago thinking that was culprit but no pain returned just used to dose up on co codamol but in December it came and never went and pain and symptoms much worse I had to go off sick I work in a busy hospital unit they started me on gabapentin but it didn't suit me at all then I switched to carbamazapine 300mg daily with amitryptilline 10mg at night gp wouldn't increase dose despite noting some benefits and I couldn't get in 2 neurology until April I'd been passed also 2 ent to rule out any causes also anyways finally seen neurology and they started me on tegretol xr 800mg had a flare up cos of slow release and got my gp 2 increase to 1000mg which I take 200mg every 3hrs and 25mg amitryptilline at night this wk it's reared it's ugly head again so gp said I can increase 2 1600mg obviously slowly I to have young children 7 and 5 and feel useless sometimes cos drugs and illness drain s u money's also a massive worry aswell as the effect it has on ur marriage it truly is a debilitating condition I have to wait until October aswell for neurology consult so I'm hoping the increase in tegretol helps hope u get a good neurologist who's expert in this horrible condition I've joined these forums 2 learn I'm not alone and it does help xx
    • richardvilla
      richardvilla vicky59618

      Posted

      Hi Vicki

      I have to been diagnosed with tn yet as they are trying to rule out sinus problems but I too have that continuous ache in my left wisdom tooth, across my cheek and around my ear which feels inflamed. I been to the dentist already and had xrays but the teeth are okay. Night time when lying down is the worst as the pain in my left gums and teeth which radiates to the front is vile. Slight pain top side of left eye too. Had amitripyline but it makes me sleep so I don't feel pain when asleep. I

      Also had tinnitus. The one saving grace is my left nostril is constantly blocked so it might be that but I'm leaning towards tn. Does it sound like tn to you?

    • vicky59618
      vicky59618 richardvilla

      Posted

      I've found that mine can sometimes manifest differently this flare started with ache in lower jaw it does all present in different ways for different people I think there's a process of elimination for everyone to go through before they end up with neurology
  • Windy338
    Windy338 julie6606

    Posted

    Julie, I was so glad I choose to have surgery.  I had Balloon Compression which was an out-patient procedure.  You are totally put out and do not feel a thing.  Studies show over 90 % of people are immediately pain-free after a very short procedure.  Pain relief can last years and can be repeated.  Best of luck and you will eventually find what works for you.   
  • Baudwalker
    Baudwalker julie6606

    Posted

    Hi Julie

    Welcome to the CLUB!!

    I agree with your fiancee that surgery is the last resort AFTER SOMEONE GIVES YOU AND IRON CLAD GUARANTEE IT WIlLL WORK!!

    The problem is that there so many manifestations of this ailment there is no 'one fits all solution' anywhere.

    Don't despair though because there is an end game somewhere.

    I am on 600m Oxcarbazepine (ox-car-BAZ-eh-peen) three or four times a day depending on requirements. The LYRICA (nasty piece of work but it really does help) 100m Three times a day can go to 150m io needed.

    The answer is RESEARCH - RESEARCH - RESEARCH and filter the rubbiseh to find what suits YOUR symptoms. As I said they are all different!

    I get massive headaches and the Lyrica kicks them into touch but I get to stumble about and can't get the words I want to out!

    By all means look HARD at everyones solutions but remember they may not fit your situation!

    I have had endless CT scans, 6 MRI scans, Just had a PET scan - like a CT but with radioactive injection. The NHS has more pictures of my head that the Sun archive and STILL THE GURU'S CAN'T GIVE ME A STRAIGHT ANSWER.

    Next one is a Ultrasound on side of face hoping that will offer up another clue for them to argue over.

    Try and climb OUT of the depression pit and remember there IS AN ANSWER for You. Most GP's need to be led by the hand to investigate the problem and even a lot of Neurologists will only see this very occassionly as well.

    Try and get Your Fiancee to get involved in your investigations so He is across the difficulties asnd appreciates it.

    I have a lot of URL's but this forum won't let me post them I am sorry.

    Best of LUCK and Hartd Up and CARRY ON.

    Ray

    • julie6606
      julie6606 Baudwalker

      Posted

      All the things I've read so far give me the same answers. I'm looking for something to alleviate pain and still allow me to function. We however did move so I'll be seeing new De. So hopefully we see some changes soon. However it does seem to take a long time to get to anywhere. My biggest concern besides the pain is losing my job. I don't have FMLA yet as my old Doctor won't fill it out since I moved and I havnt gotten to see my old yet sad trying to keep my head up!
  • Valkyrie
    Valkyrie julie6606

    Posted

    Hello Julie, I hope you are under the care of a Neurologist and not just your GP since those are some strong drugs they have you on. I can understnad the reluctance to have surgery as i have the safe feeling my self. Have you been offered Gamma Knife which has nothing to do with knives at all as its non invasive radio surgery. I had it done last year and i currently have no pain although i still have to take 900 mg Tegretol and 350mg Lyrica.I chose this as i am also on Warfarin for another condition and it's best that no surgery involves cutting which might bring on uncontrolled bleeding. Please check out this and other options suggested by the people on this forum. Keep in touch.
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